Advanced MS at 23 years old: my story

4 July 2024

Jasmine in a powered wheelchair

Jasmine lives with advanced MS at just 23 years old. Find out how she finds joy in the connections with her family, friends and healthcare professionals.

I was first diagnosed with relapsing remitting MS (RRMS) back in 2018 when I was 17 years old. With no idea what was happening, I encountered my first relapse. If you live with MS, you might’ve experienced something similar; strange sensations, pain and fear.

Looking back, I did have some symptoms before this point. I would get blurred vision and trip up over absolutely nothing.

There I was thinking that I was just clumsy, but it may well have been MS lurking in the background.

At the time I was going to college and working at a fast-food restaurant. Move forwards to 2020 and I began to really struggle with mobility issues. Although I would give it my best shot every day, work was becoming too much, and I just had to stop.

Having a job on your feet all day with MS is not ideal.

During these two years I tried a few different Disease Modifying Drugs (DMDs). Sadly, none of them were helping to slow progression and I experienced side effects too.

I carried on at home for the next couple of years and was able to walk around the house.

I was also loving exercise, and was constantly trying to keep myself going, even though the physios told me to slow down.

This was up until late 2022, when my final option for treatment was HSCT.

After I had my transplant, I went back home to my family. But my MS still was progressing rapidly.

I was put into a neurological rehabilitation centre to support my movement and independence. I needed carers at home to help me go to the toilet and get in the shower, because my mobility had declined.

Although I didn’t gain anything physically, it helped me mentally.

I met some incredible people and made memories and friends that will last forever!

I now reside in assisted-living and I have advanced multiple sclerosis, which is now secondary progressive. I am lucky that I found a place to live where they understand MS and can support me. I know other people in my situation have struggled to find care homes that cater for younger adults.

I am so grateful to have so many people around me such as friends, family and lots of different healthcare professionals, who are incredibly supportive. Slowly, but surely, I’m adjusting to a new way of life.

When you think of someone with advanced MS, you usually think of someone much older, but I’m just 23 and living through it. Although I find it incredibly hard at times, I have also had amazing experiences that I never thought could happen because of my MS.

MS changes who you are physically and sometimes mentally. It can’t take away the fact that there is always light at the end of the tunnel. There’s so much happiness available out there, you just have to look for it in different places.

I’m here and still living a fulfilled life, no matter what gets thrown at me.

You can find hope and joy from things that you never thought you could.

I feel that I’m never alone.